Change up and Bling

Saw my lung doc today, and he wants to put me back on Cyclosporine(an anti-rejection drug) as a way to be able to drop my steroid dose faster. I'm not a fan of that drug. It gives you headaches, it smells nasty even in pill form, and it makes your back look like an indoor/outdoor rug. But it won't retard the healing process after the surgery, so it is the better choice.
On the up side I got to have tea with a friend this week, and she gave me a very delightful gift. I would never recommend anyone getting me jewelry as a gift, I'm very particular about what I will wear, and usual don't have occasion to either. But this was one of the times were it was dead on. It was a pendant of lungs, not some but line but the raw organ. Picture here . It is silver (one of the few metals I wear), has that industrial/fringe feel I love, and just fits the present situation perfectly. It was a big hit at the lung clinic today as well. Just shows that no one knows you like an old friend.

Good news and set dates

I got a call from the program today saying that I am officially on the Lung Transplant list! Right now I'm classed as status 0/Zero, which means on hold. This can change with just one phone call and will be updated some time during the six week phisio boot camp. That will take place mid August. Now that I have the dates I can start looking(actively) for a place to stay for the six weeks. This should only be slightly awkward due to the Mid-month timing, not sure what kind of landlord wants to rent a decent place for just six weeks, so i may need to look at hotels, campus housing, executive suites.
So I have about two weeks to get all the stuff in place that needs to be done here in Calgary.(get a second cell phone, get some new work out clothes, load all my e-books onto my laptop, etc), then its a road trip up north and get going on the next big step of the process.

Bad Day

Yesterday was a little rougher than it could have been. A perfect storm of my own creation: I was worried about the number of new O2 tanks i had ordered (and that there wasn't enough for the week to come), I had been out and about everyday this week, and went to a movie on Friday. I SHOULD have changed out my large tank and taken a fresh one, rather than bringing one that was half full and a small take to change over to if needed. So I go see Captain America, and all I can through out the whole film is keep checking my tanks level. Add to this being hunched over in a theater chair for an hour and a half, and you get me having a panic attack because I don't think I can breath as well as I should.
So I leave the movie early, my fellow movie goer was very understanding about it all. I got home and felt better, had some dinner and lay on the couch. My chest still felt tight, so I got up and tried to loosen things up. Seemed to help a little but I begin to get worried and worked up again. I decided that at this point it was just best to take an Adivan. I don't like pills, but i would rather use a downer now and then to keep from having to go to the hospital for something that i can deal with at home.
I think one of the problems is that I get myself worked up and can't calm down. Its gotten to where my stomach is still tied up in knots from what happened yesterday. What I think would help is not having to talk about lung transplants every minute of the day. Have to deal with actual transplant or lung issues is fine. Seeing my doctor, doing tests, getting things in place for Edmonton is fine. I would just rather not have to talk about it if I can avoid it. It just makes me nervous and upset, to point where I lie in bed not sleeping because I'm shaking.
Wanna make me feel better? DON"T say I hope you feel better, tell me about your day, distract me, give me something else to maul over in my mind other than medical stuff. Medical stuff is downer at the best of times, and there is so much other more enjoyable things to talk about.
So at some point in the near future I need to go back and watch Captain America again, so no spoilers please.

It's bloody hot out

Yeah bad title but I cannot thing of a better one. No big updates this time, I saw my regular lung doc this week, he thought I was looking good. I seem to be fully over the cold now, and I am back to just about were I was oxygen wise before I got sick. So not bad. Its been about a month since I have fallen out of a daily walking routine, so i am going to fix that.
I figure a good way to do this is to post a realistic work out  regiment on here so that people can call me on it if I am not following through. So here it is: a small walk everyday(this could be 20 mins around the block, walking around while I shopping, etc) twice a day is better but I will see about that day to day, 30 situps(not a big number but its been a bit since i have done core), 15 push ups, 5 minutes on the wobble board(this is just fun). As well 2 -3 time a week I want to get out a do a 45min-1 hour long walk.
These aren't huge things, and would more than likely be negligible in a person of better health, but I am a cripple with bad lungs so it should really help out, AND its not difficult to accomplish, even on days when its 30 degrees out! Seriously what the hell nature, don't start something you can't finish

Out of the clink, AGAIN

Guess I wasn't as better as I/they thought I was, because last Thursday night I was having some distress with my breathing and had to go back into the hospital in the middle of the night. Before anyone has a freakout I am doing much better now, using less O2 than I was last week and have been given a proper goings over by several doctors, stuff is fine.
Due to the fact that I was still dealing with that cold I caught my noes was stuffed up completely, that makes it hard to get oxygen through nasal prongs. After a few hours of stressing about this and working my self up into a near panic attack, making my impair ability to breath that much worse, I had my dad take me into the hospital. Next time you see him tell he is awesome because he can't hear that enough after pushing me around in a wheel chair at 3 am when he has to work the next day.
They started me on IV anti-biotics, increase my steroids, and did a whole wack of blood work. After Five days of that I am doing much better. My noes is no longer stuffed up making it easier to breath, I am fully over that cold and all its effects,  and a few of the tests I had booked for later in the month got done early.
 Not my favorite way to spend the weekend, but over all I think I'm doing better than i was a week ago. Bad news is that this little scare has forced me to get a little more serious about preventative measures that I have to take to keep from getting sick again(because if I do they will ship my ass to Edmounton early and the bleak, friendless, grey-scape which is E-town sucks). So I will no longer be going to see Slayer/Rob Zombie at the end of the month. The crowds, the smoke(stage effects and weed), and the walking are a risk that I feel is okay, But the transplant doc does not, and he needs to know that my commitment to this is 100%. There will be other shows, and my friends that are going will tell me how it went. Now i just need to see if i can sell my ticket in time, Any takers?

Just when i think I'm out.....THEY PULL ME BACK IN!

So due to a delightful cold I caught after getting out of the hospital this week, I got to spend Sunday and Monday in the hospital. Thanks to the battery of tests I underwent last week I only had to get an X-ray and some blood work. They gave me some anti-biotic and told me that with my symptoms I should be on the up swing now and be back to normal in a few days. I go to see my regular doc at the Bone marrow clinic this week so I am not worried about this. Also got my oxygen people to swap out the old concentrator for a new one, because I really don't think it was doing a good enough job.
Not much else to report, would be nice to get out an enjoy some summer weather, or a good view of it from an air conditioned room.

Waiting for now.

So I am out of the hospital for good now. I finished all the tests they wanted and my doctor looked over them and didn't see anything that made him worry. Now all I have to do is wait. I am good at waiting in the short term, I have a bunch of books i need to read, TV dvds to watch, and plenty of other ways to keep myself busy. I should hear about progress on this by August, and the latest timeline has me going up to Edmonton in the fall some time. All my timelines are generalities and big cookie cutter blocks of time that get slide back and forth on the calender. It can be frustrating because most of the time things only seem to move one way, to the later date. BUT that being said every day the transplant is pushed into the future is another day that I can spend getting my self in better shape, preparing mentally for whats going to happen, and banking money to pay for expenses that come with all this.
I am officially on disability, so I do have some income, I am just going to have to not take the standard approach to how someone getting a government check spends it, meaning spunking it up the wall on drugs and useless crap. The stuff I like in life is cheap: coffee with friends, game night, seeing dump people trying to do something cool and getting hurt, etc. Keeping on a budget won't be an issue.
Its summer now, time to take advantage to the weather and get out and do stuff.